PRINTED FROM OXFORD SCHOLARSHIP ONLINE (www.oxfordscholarship.com). (c) Copyright Oxford University Press, 2019. All Rights Reserved. An individual user may print out a PDF of a single chapter of a monograph in OSO for personal use. date: 15 September 2019

Introduction

Introduction

Chapter:

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Introduction

Source:

Birth Rights and Wrongs

Author(s):

Dov Fox

Publisher:

Oxford University Press

DOI:10.1093/oso/9780190675721.003.0001

Abstract and Keywords

A recent survey of half of all U.S. fertility clinics found that more than one in five misdiagnosed, mislabeled, or mishandled reproductive materials. These errors can’t be chalked up to reasonable slips of hand or lapses in judgment as often as deficient quality controls; and no statute or doctrine vindicates these injuries, or says they matter as a matter of law. Victims can’t point to any physical or financial harm they’ve suffered. Some courts point out that reproductive plans are easy to invent and hard to verify. Others wonder why plaintiffs whose plans were thwarted didn’t just turn to abortion or adoption instead. And most are unwilling to cast a child’s birth as a legal injury. The American legal system treats confounded procreation less like mischief than misfortune, closer to a star-crossed romance or a losing ticket in the natural lottery—the kind of adversity that, however fateful, you have no choice but to steel yourself against and move on from: You can’t always get what you want. This indifference is surprising in a country that’s constitutionalized rights to abortion and birth control since the 1960s and 1970s. But even this “fundamental rights” status hasn’t kept states from aggressively restricting access to abortion and contraception, and the Court hasn’t extended these reproductive freedoms to practices that introduce donors or surrogates into the mix. Besides, constitutional privacy applies only to misconduct by government actors: It offers no protection against wrongdoing by any nonstate clinic, pharmacy, or hospital.

How many little girls dream of being a nun? “I always wanted to be a mother, but the marriage part didn’t appeal to me,” Angie Collins explains. “I thought if I was a nun, I could live at an orphanage, and those could be my kids.” It wasn’t the life of solemn contemplation that appealed to her. Sisterhood fit two things she knew about herself from an early age: She wanted children, and she wasn’t attracted to men. She ended up trading a religious habit for phys ed sweats. At thirty-two, the spry gym instructor fell in love with a soft-spoken music teacher named Beth Hanson. The couple made a home in Port Hope, Ontario, and decided to start a family together. They looked into adoption, but worried that lesbians like them would have trouble gaining legal recognition as parents. Besides, Collins wanted to experience pregnancy and give birth. What they needed was a man, or at least his sperm.1

“I didn’t have a friend in mind,” Collins recalls, “and my doctor was actually discouraging of using a known donor.”2 It turns out asking a relative or social contact can risk unwelcome involvement in the couple’s parenting. Known donors have even sued for legal custody based on a genetic connection to the child. Transacting at arm’s length “seemed simpler, more clear-cut.”3 But Canadian donors are in short supply, in part because the country makes it a crime to exchange reproductive samples for money. So Collins and Hanson looked to the United States, where sperm banks pay. The couple settled on Georgia-based Xytex. Its catalog features over five hundred donors, recruited with the promise of an “easy, anonymous way to make some serious money—up to $1,800 a month, so you can say goodbye to ramen and hello to steak.”4

Despite its dystopian name, Xytex projects itself as more community clinic than multinational conglomerate. A cheery representative told Collins over the phone that donors complete an extensive personal and family history and undergo physical exams every six months. The company’s website
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boasts: “You can rest easy knowing right up front, every Xytex donor ranks in the top 1% of the population in health and wellness.” The sperm bank prides itself on being “an industry leader in reproductive services with a commitment to unsurpassed quality controls.” The screening process was so thorough, the rep assured Collins, they’d learn more about any Xytex donor than they ever could about an acquaintance—or even each other. They were sold.5

After poring over hundreds of profiles, they found The One. Donor 9623 had everything they were looking for: He was fit, gifted, and easy on the eyes. His lean frame, warm smile, and fetching eyes reminded Collins of the “male version of my partner.” Xytex said his “celebrity lookalike” was Tom Cruise, but a foot taller. Donor 9623 also shared Hanson’s love of literature and music and Collins’s for sports and hiking. The Renaissance Man was an “internationally acclaimed” drummer who spoke five languages and read four books a month (“non-fiction mostly”). The couple knew hobbies aren’t inherited—still, DNA might give them a nudge. And lots of medical conditions have a stronger genetic component. Donor 9623’s six-page family questionnaire checked “no” for all 143 diseases or disorders but one. His father was colorblind.6It wasn’t just the donor’s diverse talents and clean bill of health.

His 160 IQ placed him in the company of Albert Einstein and Stephen Hawking among the top 0.1 percent of the world’s population. The thirty-year-old had earned his bachelor’s degree in neuroscience and master’s in artificial intelligence. He was currently studying for a Ph.D. in neuroscience engineering, on his way to become a professor of biomedical robotics. A Xytex counselor referred to him as the “perfect donor.” Hanson recalls, “All the other donors vanished as soon as we saw his profile.” The couple wired the company $3,000 for six units of sperm from Donor 9623. Two weeks later, frozen samples arrived in the mail. Collins got pregnant on the first try. She and Hanson were elated to welcome a son. Seven years passed.

As he grew from baby to boy, his parents took Xytex up on its offer to join a “sibling group” of families who’d selected the same donor to have children. They were hardly the only ones charmed by Donor 9623. Twenty-five families had used his genetic material to have thirty-six offspring by 2014.7That June is when Collins and Hanson got a Facebook message from a woman in the sibling group. It said that Xytex had inadvertently revealed Donor 9623’s email address in a correspondence with her. It’s company policy to keep donor contacts and identities a secret. Donors supply their
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sperm to the bank on the condition of anonymity. The leaked address for Donor 9623 also included the man’s last name: Aggeles. A social media profile linked his email to a James Christian Aggeles, who goes by Chris. His plump frame and facial mole looked nothing like the Top Gun features of his donor photograph. Okay, the couple thought, so what. But other discrepancies took them aback.

A Google search turned up documents from a Georgia court that had convicted Aggeles of burglary in 2005, shortly before Collins and Hanson had picked his profile from the catalog. He’d broken into a home and stolen musical instruments. Aggeles pled guilty and spent eight months in jail, another ten on probation. That wasn’t his first run-in with the law either. He’d been arrested several times before for offenses including trespassing, drunk driving, and disorderly conduct.8His educational career had started out promising, but he never enrolled in the touted doctoral program, or even finished college. Aggeles graduated high school as an honor student and got a full scholarship to the University of Georgia. But he dropped out a few months in, at age nineteen. That was when his psychotic breaks began.

Medical evidence in the burglary case revealed diagnoses of schizophrenia, bipolar disorder, and narcissistic personality disorder with “significant grandiose delusions.” Collins also found an online comment Aggeles had posted in 2012 to a YouTube video of a young woman describing her struggles with schizophrenia. Aggeles wrote: “It’s like my thought gets interrupted by a voice that tells me something that usually has nothing to do with what I was just thinking. It’s usually mean, and will say things that are derogatory and demeaning to me.”9 Collins and Hanson learned that having one parent with schizophrenia gives a boy a 12 percent chance of developing it by the time he can drive. That’s when the average affected male starts hallucinating. Half of young men with schizophrenia try to kill themselves—one in twenty succeed.10

“[M]y heart s[a]nk like a lead ball into my stomach,” Collins recalled.11 She wouldn’t have bought sperm that she knew came from a convicted felon with mental illness: “[A] hitchhiker on the side of the road would have been a [] more responsible option.”12

Aggeles is doing better today, with the help of medication and therapy. He made it back to college, got married, and even drums in an indie-rock band. Collins and Hanson don’t hold it against him that his donor profile was a lie. Aggeles had fallen on hard times that left him desperate for cash. “He’s not a bad man,” Collins says. “He’s a person who has an illness.” The
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couple would support their son if he wanted to reach out to Aggeles.13 It’s Xytex they blame.

The corporation got rich by looking the other way on the truth about donors whose reproductive material it hawked to thousands of families. Its don’t-ask-don’t-tell policy exploited a lax regulatory regime to profit off of families who banked their futures on its false representations about Donor 9623. That’s how Collins saw it. “I didn’t feel they were selling perfection”—just “due diligence. Who would have thought that an industry that makes people would be like this?” she asked in April 2016.14 Two months later, the New York Times profiled “a new wave of lawsuits” against U.S. sperm banks, labeling the industry “buyer-beware.”15 A November 2018 story in the Washington Post detailed a slew of yet more recent cases ranging from “babies sired by the ‘wrong’ father” to “children who inherit serious, undisclosed medical issues.”16

Professional societies that oversee the fertility industry recommend screening donors for infectious diseases like HIV, hepatitis, and syphilis. The largest banks like Xytex also test samples for genes known to cause Tay-Sachs, cystic fibrosis, and cerebral palsy—these are recessive disorders that offspring can inherit from people who don’t suffer from the condition themselves, and usually don’t find out that they carry it in their DNA until they have a child who does. But no public body or private organization requires that sperm banks conduct such analysis or reporting.17 And even the most scrupulous ones rely heavily on unverified information provided by donors themselves. Few ask for so much as a student ID or college diploma to back up their self-professed credentials, let alone run a background check or drug test. “If a donor says his Aunt Pearl died of a heart attack, we take him at his word,” a Xytex representative told Self magazine in 2006.18

People who reproduce the old-fashioned way can also pass along dangers lurking in their genetics. But sperm banks like Xytex multiply that risk to potentially scores of offspring. In 2011, news broke that one donor’s samples had been used to conceive over one hundred fifty children. None of the families had been warned that those genetic siblings could end up sleeping with each other or falling in love.19

Collins is open with her son, now ten, about where he came from. “I told him, ‘The man who helped create you and all your half-siblings has something wrong with his brain.’ ”20 The boy loves handball and geography—he knows all the street names in Port Hope and the shape of every American state. And he plays drums like Aggeles. Collins and Hanson are monitoring
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his mental health closely and will do what they can to steer him clear of the drugs that could trigger psychotic episodes. “He’s the love of our lives.”21

Dozens of parents like Collins and Hanson sued the sperm bank. The final pages of this book take stock of how things played out for them in court. For now, it’ll do to remark just how unremarkable their story is. “In households across the country,” another New York Times exposé began, “children conceived with donated sperm are struggling with serious genetic conditions inherited from men they have never met.”22 New examples make their way into peer-reviewed scientific journals every few years.

A 2012 report in Human Reproduction uncovered a nameless donor who transmitted to five offspring a genetic condition that significantly increases the risk of brain tumors, leukemia, and other cancers.23 In 2009, the Journal of the American Medical Association published the case study of a Virginia donor with a heart disorder that he passed on to at least eight of his twenty-two offspring, including a toddler who died from cardiac failure.24 In 2006, the Journal of Pediatrics chronicled a network of half-siblings conceived from the same popular donor, all of whom inherited a rare blood disease known to cause cancer, seizures, and developmental delays. Affected families had notified the bank about these health problems years earlier, but it didn’t deactivate the donor or even red-flag his profile.25 Court documents in a 2003 case revealed that a sperm bank sold hundreds of vials from a donor with a family history of kidney disease—after it learned that at least one girl conceived from his material had already inherited the disorder, which threatens renal failure.26 The sperm bank settled the lawsuit to avoid further investigation into the unknown number of other children who came from the same donor.27

It’s not just sperm banks. A 2008 survey of half of all U.S. fertility clinics found that more than one in five misdiagnosed, mislabeled, or mishandled reproductive materials.28 A 2014 study reported that hundreds of women each year are persuaded to end pregnancies they’d wanted to keep, based on dire test results that sound “a false alarm half of the time.”29 And in 2016, a national ratings website found that 18–24 percent of fertility patients reported miscues including dropped embryos, switched donors, and contaminated samples.30 These failures can’t be chalked up to reasonable slips of hand or lapses in judgment as often as deficient quality controls.31 Just how often is hard to pin down.

In other areas of health care, most states make hospitals monitor and report any major avoidable errors, like mismatched blood transfusions or
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surgery on the wrong body part. But no one tracks similar “never events” in matters of procreation—at least not in the United States. Most developed countries take reproductive negligence far more seriously.32 In the United Kingdom, the Human Fertilisation and Embryology Authority enforces rigorous and regular inspections of all fertility clinics “in line with the latest evidence.”33 Even under this strict oversight regime, the regulatory body reports that over five hundred procedures each year misplace, damage, or destroy people’s sperm, eggs, and embryos.34

In the United States, victims who take procreation specialists to court almost always lose. This puzzle has gone all but unnoticed in the case reports and academic literature.35 The only book that’s addressed it at all observes that policymakers and judges respond to “the startling consequences” of reproductive advances “with confusion and ambivalence.”36 Among legal texts, just one gives these controversies more than passing reference.37 Beyond government regulation of abortion or IVF, law and ethics scholarship has attended to different kinds of disputes: between former couples about whether or not to use their frozen embryos,38 or between children and parents whose prenatal decisions led them to be born with health complications.39 These questions about embryo disposition and offspring disability have crowded out broader inquiry into matters of procreation.

This book develops a new way to think and talk about reproductive wrongdoing writ large. Some of these wrongs deprive people of the pregnancy or parenthood they want. Others impose those roles on people seeking to avoid them. Others still confound plans for not just any child, but for one born with certain traits. Recent cases illustrate each:

Case 1: “Procreation Deprived.” Justin Hollman was diagnosed with testicular cancer at twenty. He needed chemotherapy and surgical removal of a testicle that would leave him sterile. He knew he wanted kids one day, so he deposited sperm with a fertility clinic and made regular payments to keep it safely stored. But when he returned for the sample a decade later, happily married and eager to start a family, it had been destroyed.40

Case 2: “Procreation Imposed.” Shelby Nell, a young single mother, had found a job she liked and a man she loved. Nell wanted a healthy sex life, one that wouldn’t risk another child she couldn’t afford to raise. She got a prescription for birth control pills, but the pharmacist gave her prenatal vitamins instead. Her relationship couldn’t bear the
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weight of the resulting pregnancy. Nell was forced on welfare to support and raise her toddler and infant on her own.41

Case 3: “Procreation Confounded.” Eve Rubell’s eye exam revealed a swirling pattern. It was a sign that she carried Fabry disease, a condition that’s debilitating for boys. Rubell didn’t suffer any symptoms herself, but any male child she had would. It’s a risk that she and her husband sought to avoid. They created six embryos in a lab, enough to get two females. But the hospital implanted one of the other four instead. Rubell gave birth to a baby boy afflicted by the disease.42

Hollman, Nell, and Rubell all sued. Each lost. Never mind that negligence was to blame. However egregious the transgression, no statute or doctrine says that their injuries matter, legally speaking. As one court put it, the “law does not recognize disruption of family planning either as an independent cause of action or element of damages.”43

Take procreation deprived. When misconduct shatters people’s dreams of parenthood, victims can’t point to any physical or financial harm they’ve suffered. And fertility patients were never assured biological children. Hollman, the cancer survivor, might not have been able to conceive, even if the clinic had kept his tissues safe. But since it was still altogether possible that his sample could have yielded offspring, shouldn’t he be compensated for whatever chance that he did have—before the clinic's misconduct took that chance from him, when it lost his only samples, making reproduction impossible? Proportional recourse is the norm when medical malpractice reduces a patient’s odds of recovery or survival, even if he (or his estate) can’t prove that a doctor’s misconduct is what led him to deteriorate or die, or that his preexisting condition wouldn’t have caused that outcome anyway. But courts don’t compensate for lost chances to reproduce. Some are content that adoption and other paths to parenthood remain open. Others worry that reproductive plans are too easy to contrive and too hard to verify.

Courts harbor similar suspicions against allegations of procreation imposed. The judge in Nell’s case expressed a similar concern that people might “invent an intent to prevent pregnancy.” It would “open the door to fraud,” she explained, were courts to credit “claims of inadequate directions, wrong pills or any ineffectiveness of the chosen contraceptive method.” However sincere Nell’s allegations, affirming them would invite sham suits by people trying to make someone else pay for their failure “to exercise restraint or take responsibility.”44 Besides, if Nell had really wanted to avoid
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reproducing, why did she keep the baby? And having declined abortion or adoption, didn’t she nonetheless come to appreciate his birth as a gift, even if not one she’d asked for?45 Even though that arrival might disrupt her life plans, courts insist that those trade-offs are bound to be outweighed by “the intangible but all-important, incalculable but invaluable ‘benefits’ of parenthood.”46

Finally are thwarted efforts to choose a child’s sex, health, heredity, or some other feature that’s meaningfully influenced by the genetics he’s born with. Courts resist finding for plaintiffs like Rubell when professional misconduct confounds their offspring preferences. Donor switches, embryo mix-ups, and fetal misdiagnoses don’t produce unwitting parents, judges point out. These are people who’d set out to have a child, and got one—even if the experience of raising that child departs from their reasonable expectations. Courts refuse to rubber-stamp parental disappointment for fear of sending the intolerable message that any mother or father wishes a child hadn’t been born, or loves the child less than some other one who’s different. Most states are “unwilling to say that life, even life with severe [impairments], may ever amount to a legal injury.”47The American legal system treats confounded procreation less like mischief than misfortune, closer to a star-crossed romance or a losing ticket in the natural lottery—the kind of adversity that, however fateful, you have no choice but to steel yourself against and move on from. You can’t always get what you want.

This indifference is surprising in a country that’s constitutionalized rights to abortion and birth control. In the 1960s and 1970s, the U.S. Supreme Court designated “decisions whether to accomplish or to prevent conception” as “among the most private and sensitive” that a person makes over the course of a life.48 But even this “fundamental rights” status hasn’t kept states from aggressively restricting access to abortion and contraception.49 And the Court hasn’t extended these reproductive freedoms to practices that introduce donors or surrogates into the mix. Besides, constitutional privacy applies only to misconduct by government actors. It offers no protection against wrongdoing by any nonstate clinic, pharmacy, or hospital.50

PRINTED FROM OXFORD SCHOLARSHIP ONLINE (www.oxfordscholarship.com). (c) Copyright Oxford University Press, 2019. All Rights Reserved. An individual user may print out a PDF of a single chapter of a monograph in OSO for personal use. date: 15 September 2019